Communication camp brings families together for rare experience

By Sue Tiffin

Published Aug. 23, 2018

For the past four years, Bethan McCutcheon has planned crafts and science experiments, organized schedules and sleeping arrangements and offered an unforgettable, unique camp experience to more than two dozen people annually from across Canada and the United States who have complex communication needs.

And it all happens in Minden, at Kinark Outdoor Centre.

The Moore Falls resident is mom to two teenage boys with Angelman Syndrome, a rare neurogenetic disorder which causes challenges including motor impairment that affects speech. Tecwyn and Tathan use Proloquo2Go, a communication app on their iPads that is loaded with a robust vocabulary so they can communicate with more autonomy. Communication camp is McCutcheon’s way of ensuring people with complex communication needs and their families are supported in their use of alternative and augmentative communication (AAC) and can have fun. Twenty-six campers, all with Angelman Syndrome, attended the camp this year with their families. They ranged in age from four years old to 40 years old, and came from throughout Ontario including from North Bay, from Montreal, and from throughout the United States including from Pennsylvania and Missouri.

“It brings them to an environment where it normalizes everything,” said McCutcheon. “It creates natural opportunities as well as structured opportunities to use AAC. It provides professional AAC support on the journey. No matter where you are coming from on the AAC journey: haven’t started, just started or been at it for years…you are in the right place.”

Despite the camp being her vision, McCutcheon acknowledges the numerous volunteers and sponsors that help her make it happen.

“Minden is such a kind and loving community,” she said. “We are so proud of where we live. Volunteers from Minden come to Camp POM to cook, they donate resources and supplies, they fundraise, they come to participate, and they not only give but they get.”

“When I made a commitment to volunteer at the camp, my thoughts were…children, help out in the community, families, new relationships, new experiences and more,” said Kinga Baricz, who offered to help at the camp for the first time this year. “What I got out of a whole day of volunteer work was more than expected. You need to be there to experience the energy level, positivity, blessing, laughter, togetherness, care for each other and much more. I think we do need to get out and help each other more. These connections change your outlook in life, makes you a better person and enrich other people’s lives. Truly a life changing experience.”

Since McCutcheon has organized the camp, first at Camp Kirk with support from the Lions Club, and then at KOC as it is closer to her home, she said dozens of friends, the community and sometimes local people she barely knows have stepped forward to cook, run learning sessions for caregivers and offer a helping hand to campers and their families to help encourage worry-free fun. She especially credits chef Sarah Hall for volunteering to create a healthy menu that caters to a variety of diets, shopping locally for ingredients and preparing meals in advance at the Kinmount community kitchen, which is donated space. The meals allow families to join together

“Camp POM has its hand out,” she told the Times. “If you take a risk and grab it you will quickly know, we’ve got you. It’s not a respite camp. But it is a camp where we all pitch in organically and that makes it so unique and allows the caregiver to exhale. People have come to be part of this camp because they know it’s an inclusive place to be. They will be welcomed and met with a smile exactly as they are.”

The KOC staff quickly learns campers names and helps facilitate activities, including swimming, boat rides, a flying squirrel high ropes element, crafts and science experiments. By engaging campers, staff and volunteers ensure parents and caregivers have time to connect with each other and learn in one-on-one or group education sessions.

“Kinark loves hosting POM and staff look forward to it every year,” said Ryan Mortell, program manager. “It’s an honour to work with such a welcoming, grateful and happy community and we’re thankful to be part of the event.”

The camp offers a sometimes rare opportunity for parents and their kids to relax, learn and meet in person away from online communities, and many families return each year, though new campers are welcomed each year.

“Why do we return?,” said Charles de Broin of Montreal, whose son Nicolas is 40 and whose family has attended the camp three years in a row. “Well, for the adventure, the warm welcome to a community that shares the same hopes and dreams for our children young and old, to be recognized as people, not labels. We also seek, like all the families that gather in this bucolic environment, to give voices to our children for them to be able to express themselves and make life choices.”

Jenn Reinheimer has travelled to the camp from Pennsylvania for the past four years, alternating visits with two of her three kids.

“Obviously it means the world to us,” she said. “The fellowship with other families that ‘just get it’ is wonderful. Plus the experts that come in and give up their time to teach us all is the best.”

Volunteer experts included Alicia Garcia, a speech-language pathologist from Muskoka, who offered AAC consultation to families, TLDSB special education consultant Sean McCutcheon who led parents through a session on what they need to know about developing the individualized education program their children use in public school, Karolina Krystyniak who led a session on shared reading, and Alison Rumball who created and collected resources for campers based on their own unique preferences.

Walkabout Farm Therapeutic Riding Association Inc. was also open to Camp POM participants during their visit to Minden.

Camp POM was supported with funding from the Canadian Angelman Syndrome Society and the community helped fundraise when Archie Stouffer Elementary School sold ice cream donated by Kawartha Dairy to students and photographer Eleanor Dobbins donated her stipend from photographing the ASES graduation party to the camp. Kinark receives provincial funding that serves children and families with respite opportunities and includes Camp POM in its budget, offsetting some of the expenses related to facility and summer staffing costs through federal and provincial grant opportunities throughout the year when possible.

The camp offers three hot meals to campers and their family each day, craft and experiment supplies, communication apps for those who need it, books and supplies including everything needed to continue with communication after camp down to tape families can use to hang communication pages in their homes, and surprises for campers, like flutter boards with laminated communication pages attached for campers to use in the water. If in need, camp fees - about $200 for a parent and their child for three days - can be subsidized or fully funded by donations. McCutcheon said there is always a need for volunteers, and for donations to help support camp operations, and she is grateful for Minden’s support.

“It’s now four years later and countless families have been supported and refuelled,” she said. “People are good.”

For more information about the camp, contact McCutcheon at 705-934-0100. Donations can be made to TD Bank, aCamp POM, account number 3042-5217458.

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